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THE PHONE RANG late on November 15, 1977. Betty and Allan Bellchambers were getting ready for bed when a man’s voice broke the news: Robin Windross, Betty’s twenty-one-year-old son, was missing. Betty collapsed, and Allan angrily said a few words “I should not have said,” he later admitted in a legal declaration. For sixteen years, the Huronia Regional Centre had provided Windross’s care. How could they just lose him? HRC was a sprawling institution in Orillia, a ninety-minute drive north of Toronto, for children and adults with intellectual disabilities. Founded in 1876, it was one of Ontario’s oldest and largest facilities. There were multiple buildings overlooking Lake Simcoe and, on the other side of the road, a farm and a cemetery. Windross had grown up in the centre’s children’s wards and had been transferred to cottage C, an adult ward, close to the time of his disappearance. According to Allan, Windross was terrified of cottage C. Betty and Allan got the impression that bad things happened there. They say their son turned into a different boy after the transfer—they knew he wasn’t happy but didn’t know what they could do without evidence. Now Windross was gone—vanished into a damp Ontario fall. Shortly after midnight, according to the missing person’s report, an officer with Orillia Police Service took down the statement of the person who had last seen Windross, an HRC counsellor named T. A. Anderson. According to Anderson, Windross and other residents had boarded a bus to see a hockey game at a community centre. Windross had gone to the game and been returned to HRC, according to Anderson, at which point he’d gone missing. The police report notes that Anderson was conducting a search of the city and HRC grounds, presumably in the middle of the night. Who told him to do so, if anyone, is not clear, and the handwritten eighty-six-word police report contains errors. (Betty and Allan are referred to as “foster parents.”) Windross was nowhere to be found that night, and subsequent searches turned up nothing. Nearly forty years later, in 2013, the Ontario government settled a class action lawsuit out of court, and the claims of more than 1,700 former HRC residents who had alleged systemic abuse and neglect were eventually approved. The lawsuit was part of a wave of similar class action suits from former residents of other institutions across the province. Some former residents, or their families, didn’t meet the legal criteria to be claimants. Betty and Allan’s claim was among those denied. Shortly after the HRC class action was settled, Ontario Provincial Police began looking into numerous deaths connected to the facility—including at least one where there was no proof of death but foul play could not be ruled out. Cases like that of resident 16,628. ROBIN KENNETH WINDROSS was born in Penetanguishene, not far from Orillia, in 1955. Very little is known about his biological father, and Allan was more of a father figure to him. Betty was seventeen when she had Windross. Both pregnancy and delivery were normal. Soon there were other siblings, whom Windross protected. “He was always good to his sisters,” Betty, now in her mid-eighties, says. “When they were babies, he’d sit right in front of their crib and play there.” By age five, Windross had been referred to HRC. Though the exact circumstances of his admission are unclear, it appears that doctors in Penetanguishene and at Toronto’s Hospital for Sick Children noticed he was developing slowly and recommended he be placed in institutional care—a catch-all solution at the time. But, Allan says, Windross looked worse the longer he stayed at the facility. “If I had known [about the conditions at HRC],” Betty wrote in a legal declaration in 2014, “I never would have put him in there.” Windross was admitted in June 1961, at age five and a half. Though his parents and eventual teachers described him as a good kid, some clinical files alleged he was “bad tempered, hyperactive and [had] quite a behaviour problem.” Betty and Allan deny that Windross ever exhibited any violent behaviour and strongly disagree with HRC’s assessment of their son as aggressive. He was diagnosed as “severely retarded.” Betty was also labelled feeble minded and deemed unable to provide a suitable home. The appraisal of Betty seems more literary than scientific. “She appears delicate, quite thin, and of a nervous temperament,” one comment reads. Windross was placed in a children’s ward. A note in his HRC file described him as a “likeable youngster,” and a letter from a pediatrician mentioned he was “bright enough” to attend a school for children with developmental disabilities. Though he occasionally exhibited destructive behaviour, his HRC file also notes that he showed little to no aggression during sports and was quiet, cooperative, and artistically inclined. Windross eventually became friendly with other residents. “He was a good guy. He was just like me or any other kid in there,” Arthur John Timleck, a former HRC resident, told me. While Timleck would try to escape from the facility any chance he could get, Windross “would run anywhere, without any particular goal in mind given the slightest chance,” a pediatrician told Betty. At the time, she lived and worked in Midland. After Windross ran away during a home visit at age six, the same pediatrician said it would be “better for all” if he remained at HRC for at least another six months. Betty and Allan moved to Orillia around 1970 and lived a short drive from HRC. Records show they visited Windross often and were seen as “loving and concerned.” They repeatedly expressed a desire to bring him home, but HRC raised questions about his future. What would happen to him if they became ill? Who would take care of him? In 1974, the Bellchambers wanted to discuss options that would allow their son to “work toward some type of independent living,” such as learning a trade. HRC suggested they wait “until at least the end of the school term” before discussing “alternatives for future placement.” Then three more years passed. In the fall of 1977, Windross completed his education, which was focused on simple tasks such as telling time and preparing snacks, and was assigned to vocational training. He was put on laundry duty and tasked with delivering clean clothes to other residents. Around this time, Windross was transferred to the adult ward; Betty and Allan noticed that he seemed different after that. He would not allow them to touch him or even go near him. After home visits, Windross wouldn’t want to return to HRC. When they arrived at the facility, Robin would begin shaking and crying. “I almost had to force him out of the car,” Allan wrote in his legal declaration. “He was scared to go back,” Allan says. According to his parents, he was being abused by some of the staff. “He said they would touch him and then he pointed to his private parts,” Betty wrote. The couple was outraged but felt powerless to do anything. “We figured that, without hard proof of what was happening to Robin there was nothing we could do,” Allan wrote. Timleck also told me that sexual abuse was rampant at HRC and said that he was also sexually abused by some staff and residents. “There’s supposed to be night watch. He doesn’t do nothing. He just sits in the office and reads his comics.” By the time Windross went missing that November, HRC was already infamous. A visitor’s account by Pierre Berton for the Toronto Star in 1960—seventeen years earlier—had loosely compared the facility to a concentration camp. Berton described seventy-year-old overcrowded, understaffed, and unsanitary buildings that had fallen into disrepair. The piece led to a heated discussion in the legislative assembly of Ontario, and multiple reports over the following years raised even more awareness of the conditions at HRC. In the 1970s, still prior to Windross’s disappearance, the Globe and Mail reported on the stabbing of two HRC residents by a third resident. This incident, according to the article, led to outrage among the parents of patients who were still at the institution. In 1976, a deputy minister named Joseph Willard conducted more than 175 interviews, some confidential, with staff members, for a report to the Ontario government about the management and operation of HRC. The report recommended introducing an ombudsperson to ensure an independent review of all abuse allegations at the facility. The OPP eventually began an investigation into multiple allegations related to HRC, but that was a year too late for Windross. Despite HRC’s well-documented problems, the officer filing Windross’s missing person’s report in the early hours of November 16, 1977, seemed oblivious to the possibility of foul play. T. A. Anderson’s full name was not recorded. HRC’s files on the case are limited. They include only a handful of reports, letters, and memos authored by police. In June 1978, dozens of staff members conducted another search, finding nothing relevant to the disappearance. Later that year, a funeral for Windross was held at Betty and Allan’s request. In 1985, Windross was retroactively discharged from HRC. In a letter to Allan, HRC offered no apology or explanation for his disappearance, but they offered to plan a memorial service and said they could make a chaplain available. By the end of the twentieth century, some institutions for those with intellectual disabilities were beginning to close, and accountability for past injustices had begun. In 1992, Harold Rogers, a seventy-two-year-old former HRC attendant, was charged in connection with the death of a resident named Albert Morrison almost forty years earlier. According to Rogers, Morrison had run away from HRC and was punished by being made to wear pyjamas. Rogers stated that Morrison showed up to breakfast in plain clothes instead; other residents said they witnessed Rogers assault Morrison after that. Morrison died of a ruptured liver a short while later. At the time of the death, a coroner’s jury initially absolved all HRC staff, including Rogers, of any culpability. He died before the 1992 case went to court. IN JANUARY 2007, a former HRC social worker named Marilyn Dolmage and her husband, Jim, were having lunch with two HRC survivors, Marie Slark and Pat Seth, who had both been long-term residents in the 1960s and ’70s. Like many others, Slark and Seth had endured physical and emotional abuse. Both were sexually abused: Seth at HRC and Slark at another residence where she had been placed by the centre. The two women had been part of Marilyn’s caseload, and they developed a friendship with her after they were discharged. Marilyn herself left HRC in 1973. When the mealtime conversation turned toward HRC, Jim was struck by the vividness of Slark’s and Seth’s recollections. “They were in a unit with twenty-seven or twenty-eight kids,” he says. “They remembered the names of, like, twenty-four—first and last names.” At the time, Canadian institutions were beginning to face calls for reconciliation, including a class action lawsuit, over the history of systemic abuse at residential schools. Seeing parallels between the treatment of two vulnerable groups, the Dolmages began talking with lawyers, who suggested they conduct a videotaped interview of Slark and Seth. After seeing the footage, the lawyers agreed there were grounds for a class action suit but passed them on to another firm. By the spring of 2009, retainers had been signed with Koskie Minsky, a firm that was also involved with the Indian Residential Schools Settlement Agreement. At first, everything seemed to be going well. Koskie Minsky suggested they seek $2 billion in damages—same as the residential schools settlement. Though the Dolmages had no legal training and had never been involved in anything of that magnitude, Jim, a retired high school teacher, became Seth’s litigation guardian, and Marilyn became Slark’s. Though the Ontario government had compiled a report in 1971 about the overcrowding and understaffing at HRC and similar institutions in the province, the Crown still fought the class action, denying that abuse or neglect had occurred. With trial looming in 2013, Slark, Seth, and the Dolmages were elated. “We thought . . . the stories would finally be told publicly and would be reported by the media,” Marilyn says. “And that people would get some money—that they’d be able to live better.” Though Koskie Minsky had been promoting a trial publicly, the Dolmages say, the firm forwarded them a settlement offer for $35 million. In the end, more than $8 million of the settlement money went toward legal fees, according to the Dolmages; another $2 million or so went to a class proceedings fund. Though the then attorney general of Ontario stated in 2013 that notices were sent to around 4,500 individuals who may have been eligible as claimants, only 1,758 former residents eventually filed claims; Jim and Marilyn believe that some eligible individuals may not have received the notices due to a lack of accurate addresses on file. Specific amounts for each claimant from the remaining $23.45 million were determined as per a system that assigned points based on class members’ experiences of physical and sexual assault. The Dolmages say that survivors who could not verbalize who had harmed them, or who did not submit a claim for specific harm, were granted $2,000 for having lived at HRC during the defined period. “Here we have been bringing vulnerable people to access justice, and they get screwed again,” Marilyn says. By the time the class action was settled, HRC had already closed. Other decisions in similar class actions followed, including at Rideau and Southwestern regional centres in eastern and southern Ontario. According to the Dolmages, in the later suits, over a million unclaimed dollars were reverted to the provincial government. In 2014, the OPP began a review of a dozen prior criminal investigations with links to HRC. The team consisted of then detective inspector Martin Graham of the OPP’s criminal investigation branch, four detectives, and administrative support. The team also looked into the departure of around 650 residents who had left HRC under unclear circumstances between 1944 and 2009. Some had been “discharged to self,” while others had “eloped.” Investigators requested records from the ministry of community and social services, now part of the ministry of children, community, and social services, which had taken over HRC operations in the 1970s. In an email I obtained, one investigator described a “lack of cooperation” and “an amazing set of roadblocks” in getting the records, which, according to the email, took the MCCSS more than six months to produce. Once the OPP received the records, the team discovered they were vague and, at times, faulty. According to Graham, the OPP started searching for a 10 percent sample of the 650 departures. Eventually, they found all the former residents included in that sample. Windross was not part of this sample, but his case was one of the dozen criminal investigations that were reviewed by police. The central question was to determine what had happened to him: Did he leave HRC of his own volition, or was he a victim of foul play? Graham says foul play has never been established. “There is no evidence, to my knowledge, to indicate that his disappearance is a crime.” But the inconsistencies around Windross’s disappearance have haunted his parents. Anderson told Orillia Police Service that Windross had returned to HRC after the hockey game. But Allan said HRC had told him that Windross was last seen at suppertime, after which they thought he had gone to the game. The OPP confirmed a witness had seen Windross getting into someone’s car on Front Street in Orillia earlier that afternoon. In a subsequent email, Graham said that “no definitive conclusion as to where or when Windross was last seen can be determined.” Marilyn Dolmage, who left HRC four years before Windross’s disappearance, can’t remember anyone with T. A. Anderson’s name. For years after Windross’s disappearance, Betty and Allan would be downtown somewhere and Betty would start looking at men who resembled her son. “I thought we were going to lose her,” Allan wrote in a statutory declaration. As for Allan, he couldn’t drive by the institution without his blood pressure rising. “[Robin] was at HRC so they could take care of him, not lose him,” he wrote. “I am totally disgusted with the staff for their negligence.” The Bellchambers say no one has ever called to apologize or take ownership over the loss of their son. A 2019 article in Orillia Today discussed his disappearance, but apart from that, there has been no media coverage since 1977. No charges were laid in any of the cases the OPP examined. Though Graham said it would not be appropriate for the OPP to comment on HRC’s legacy, he described the Dolmages as “fierce and fantastic” and said Windross’s disappearance was “incredibly disturbing.” A DNA sample was collected from Betty in 2015 and submitted for comparison to unidentified human remains in Ontario and elsewhere, but none has ever matched. Though HRC and many institutions for those living with developmental disabilities have closed—some as recently as 2009—remnants of the system can still be found in today’s treatment of people with disabilities. Megan Linton, a PhD researcher at Carleton University who works with the Disability Justice Network of Ontario, pointed to the continued use of chemical restraints and seclusion—methods of control and punishment that were HRC mainstays, according to survivors. Linton was not familiar with Windross’s case but said she routinely works with vulnerable groups. “I am constantly afflicted and haunted and fear cases like Robin’s because I know . . . so many similar stories where families are just left wanting and waiting for a response, a change, an answer. And nothing ever comes.” ON MOTHER’S DAY in 2023, I joined a group of more than two dozen HRC survivors and supporters at a cemetery across the road from Lake Simcoe. The OPP headquarters, a 640,000-square-foot complex that opened in 1995, loomed over us in the distance. Some former HRC buildings now contained courthouses; still others appeared abandoned. At the cemetery, I planted flowers and listened to stories of survival and escape, including by Windross’s friend Arthur John Timleck, who has since passed away. Notably, Betty and Allan were not in attendance. Recently, they told me they were having health problems. When we spoke at our first meeting, I had asked Betty how she was doing. Her answer was reflexive: “Missing my son,” she had said. At the time, I was looking for people to go on camera for a CBC documentary. Betty and Allan seemed open to it, but the film ended up going in another direction. Still, I left their apartment with Windross’s nearly 500-page HRC file. As Allan walked me out of the building, the conversation returned to the class action. He made a zero with his fist, signalling the amount of settlement money he and Betty had received. It seemed a gesture that encompassed more than just a monetary amount. In the strange reverse alchemy of HRC, Windross’s file photos showed a progressive deterioration. The very first photo of him showed a young boy the institution had not yet touched. “I believe Robin is alive,” Betty wrote in her declaration. “I hope he is happy somewhere.”  BY ZANDER SHERMAN, thewalrus.ca

Former HRC resident shares story of neglect and abuse; 'You had no control over your life. Families had no idea what was going on inside'.  Although he can't read and write, Joe Lambert can share a deeply personal story. The Stratford resident has educated college and university students about his difficult life, which has included his continuing recovery from trauma after living in provincial institutions, including the Huronia Regional Centre (HRC) in Orillia. Sharing experiences about incidents of neglect and abuse have impacted students studying to work in social services fields, some brought to tears to hear first-hand accounts, said Mirjam Schut, who has travelled with Lambert and assists with his presentations at Fanshawe College and Brock University. "Joe always wanted to teach about institutions, about what he went through," said Schut, lead facilitator af Facile Perth. Lambert, who lives independently now with his wife of 19 years, Diana, and their dogs Lady, Misty and Scotia (and several cats) said it is difficult telling his story because it brings back memories and feelings that are "difficult" to deal with. But he says it's important that the younger generation of students are aware of what people with developmental challenges may have lived through. And it is important for their future careers to "know how to respect people and their choices." The HRC was shut down in 2009, and the provincial government later officially apologized for many years of abuse. A class action lawsuit resulted in payments to survivors. Lambert spent time in a group home after leaving the institution, but he doesn't agree with that way of living, preferring to have his own choice on where to live and who to live with, or what and when to eat, for example, he said. During the presentations with students, Schut runs through a slide show. One of the photos shows a beautiful image of the HRC from the outside, which is deceiving, he said. Lambert talks about choices and control. "You had no control over your life," he said of past experience at institutions. "Families had no idea what was going on inside," Schut added. At the end of the presentations, students always ask questions. Professors appreciate the first-person education provided, Schut said. Students are not the only people taking notice of Lambert's efforts. He is winning some prestigious awards for his efforts. Megan Watson, a professor in the developmental service worker program at Fanshawe College, said students leave his presentation with a completely different understanding of institutions and survivors. Watson mentioned his impact in her nomination letter for the Jason Rae award, which he subsequently won. The award is given to a person with an intellectual disability who has demonstrated leadership and given back to community and presented by Community Living Ontario. Lambert travelled to Ottawa by himself to accept the award as part of Community Living Ontario's Inspiring Possibilities conference. Watson said Lambert is a passionate advocate for himself and others. She said he is kind and considerate and his dedication to educating others so that history does not repeat itself is evident in each presentation. Students leave his presentation with a completely different understanding of institutions and survivors, she said. Jessica Jantzi, an adult protective service worker with Family Services Perth Huron, nominated Lambert for the David West/Blanche MacDonald award, presented by the Adult Protective Service Association of Ontario (APSAO). The award is given to a person or group of adults who have a developmental disability, for recognition of achievement in their community. He won that award, too, placing the plaque on the wall near his kitchen table. Schut and Lambert are also hopeful they can expand their presentations to include secondary schools. Lambert is carrying on talking about his past, though it remains hard to do so. He is one of 25 people providing survivor stories for an upcoming book project written by a professor at the University of Waterloo. He will also continue on with presentations at post-secondary schools. "I really believe this is a story the students will remember and take with them when they do their jobs," said Schut. By Paul Cluff, orilliamatters.com

Content note: institutional violence, mass graves, sexual abuse, ableism, eugenics Institutions, be it prisons, personal care homes, group homes, or psychiatric institutions are designed to segregate, isolate and invisibilize disabled people, particularly those labelled with intellectual/developmental disabilities. These institutions are unique, but are intricately woven together with carceral logic–which rationalizes confinement and control. The Manitoba Development Centre (MDC) is one of the last two remaining large-scale institutions for people labelled with intellectual/developmental disabilities in Canada. For well over a century it has been used to forcibly remove disabled people from their communities and isolate them. The provincially operated institution has inflicted violence on disabled people who have spent lifetimes incarcerated in the MDC. After decades of advocacy, the province finally announced on January 29th, 2021 that the MDC would be closing. In a press release, Community Living Manitoba said, “The closure of the Manitoba Developmental Centre is the first step in abolishing institutional care." The fight for freedom for disabled people is far from over. The need for abolition is more urgent than ever for disabled people. Through this article, I examine the violent history of disability confinement in Manitoba, the generational fight for deinstitutionalization and the need for abolition beyond the closure of the MDC. Institutional History Built in 1877, the Stoney Mountain Institution was the first institution constructed to contain disabled people–such that one of the first people incarcerated in Stoney Mountain was charged with being a “lunatic." As eugenics grew across the country, there was an increasing desire for the categorization and segregation of people labeled as “feeble-minded." Eugenics was central to the development of a white protestant settler colonial state. Across Canada, this was enforced differently, most apparently in Alberta this was legalized through the passage of the Sexual Sterilization Act, 1928. More than 2,800 people were forcibly sterilized through this Act. Indigenous people were “the most prominent victims of the Board’s attention," accounting for more than 25% of people forcibly sterilized between 1969-1972. While Manitoba did not pass sexual sterilization legislation, institutionalization was used to enforce eugenics through sexual segregation and isolation. Eugenics and institutionalization are settler colonial tools used to eliminate and invisibilize populations deemed “unfit." Medical Historian Dr. Erika Dyck’s Managing Madness (2017) explains the role of the construction of the Asylum in the prairies alongside the rise of other institutions–provincial legislatures, Indian residential schools, universities, and sanatoriums. She explains, “These institutions dotted the landscape, reminding onlookers of the growing pains of civilization and the reality of settlement that went hand in hand not only with law and order but also disorder and incarceration.” The Manitoba Home for Incurables (what would become the MDC) was built in 1890. Institutionalization was developed and enforced to eliminate disabled people through isolation, segregation and sterilization. Many non-disabled people were also forcibly institutionalized into the Home for Incurables, including sex workers, Indigenous people, poor people, refugees, Franco-Manitobans and people who used drugs and alcohol. Institutionalization in large-scale institutions was the primary policy response for disabled people until the 1970s. In Manitoba, three institutions were established to confine and segregate disabled people: the Pelican Lake Training Centre, the Manitoba Home for Defectives and the St. Amant Centre. Government reports, alongside the testimonies of survivors, detail the violent conditions of incarceration. Staff had complete control over every decision of incarcerated disabled people. There was no access to privacy, such that there were no stalls between toilets, and dormitories were shared with dozens of residents. While significant understaffing resulted in neglect of residents. Institutions have always been, and continue to be places of immense violence. Institutional settings are inherently violent, and their conditions result in ongoing physical, sexual and emotional violence inflicted by staff. In sworn affidavits, survivors detail routine use of solitary confinement, starvation, sexual, emotional and physical abuse and neglect. Like prisons, institutions were constructed in rural, remote locations. This forcibly removed disabled people from their communities, and families. Like all institutions across the prairies, police and the RCMP were responsible for the capture and confinement of disabled people. The film, Freedom Tour (2008), documents institutionalization across Canada. In the film, survivors detail the attempted escapes from the institution only to be captured and forced to return to the institution by law enforcement only to be punished by the staff. Many people were incarcerated in the MDC for their entire lives. And, the cemetery demonstrates murderous conditions of institutional life. The cemetery has headstones for children from 1 years old to people aged 81. While some information is available about the graves, there are believed to be many unmarked graves in the cemetery. Opposing the violent conditions within institutions, the deinstitutionalization movement emerged. A movement of disabled people, parents of disabled children, scholars, journalists and doctors came together to challenge the system of institutionalization. Deinstitutionalization commenced in 1982 with the project Welcome Home, but unlike other provinces, Manitoba did not have an end date for institutional closure. In 2011, Community Living Manitoba won a human rights complaint against the MDC resulting in 50 more people being freed from the institution. Labour and Deinstitutionalization While most institutions across Canada closed in the 2000s, including BC, Ontario and Alberta, in 2004, the NDP government in Manitoba invested $40 million into upgrades of MDC. How did Manitoba become the national face of institutionalization and confinement of disabled people? Liat Ben-Moshe’s Decarcerating Disability draws the important parallels between the role of labour unions organizing in maintaining institutionalization and incarceration. In Manitoba, the Manitoba Government and General Employees’ Union (MGEU) perfectly demonstrates the connection between institutionalization and incarceration. MGEU is the leading force for the defense and proliferation of carceral spaces across the province. MGEU represents 32,000 workers, 360 of which are employed at the MDC, and 120 of whom are employed in prisons. This is but a fraction of their large workforce, yet MGEU has spent considerable hours invested in their proliferation. James Wilt and Bronwyn Dobchuk-Land examine the role of MGEU in Manitoba’s growing carceral landscape, noting that “...while the trend toward punishment and securitization is not unique to Manitoba, the MGEU is a key piece in solving the puzzle of how new jails and police have become a project of the social democratic left.” A key piece in solving the puzzle of the maintenance of the MDC is MGEU’s continued pressure and political relationships. MGEU has been committed to, and benefitted from the ongoing institutionalization of disabled people in Manitoba. MGEU has levelled two primary arguments to justify the institutionalization of disabled people in Manitoba. The first, carceral ableism, which justifies that some level of disability requires institutionalization. To do so, MGEU relies on the narrative that the people incarcerated are too disabled and too complex to live in community, a blatant lie used to justify incarceration. There is no level of care, no form of disability that requires incarceration. In MGEU president’s Michelle Gawronsky’s press release following the news of the closure, she raised concerns about community care as, “The staff at MDC provide a safe, familiar environment and many clients at MDC have complex needs, including 24-hour medical care.” Despite decades of ableist violence inflicted by the structure and workers of MDC, MGEU has frequently sought to celebrate its members, such that in 2010, MGEU inexplicably purchased radio ads in hopes “this ad campaign will help get the word out so that other Manitobans can hear about the great work our members are doing for MDC clients and their families." Between 1990 and 2010, there were at least 10 cases of worker-inflicted violence against incarcerated disabled people. In 2007, Dennis Robinson, a 52-year old man incarcerated in the MDC died while on an outing. An inquiry into his death found that the “outing” was supposed to be to the park. Instead, the eight incarcerated residents were taken on a drive around the city–without seat belts. During this drive, staff members stole the incarcerated people’s money to buy themselves coffee which they then drank in front of the residents, proceeded to run personal errands, and ultimately decided to not go to the park. The staff members then left Dennis Robinson in the van, where he was found dead one hour later. The second argument that’s levelled against the closure of the MDC by MGEU is job loss. The isolated institutional location of MDC was partially justified on the grounds of rural job creation. In a 2016 election survey commissioned by MGEU, their tenth question asks: “The Manitoba Developmental Centre in Portage la Prairie provides important services to people with intellectual disabilities. It is one of the region’s largest employers and is the source for good jobs that support the local economy. What is your plan, if elected, to ensure MDC remains open?” But institutional settings have never been good for workers. Historically, the institution relied most heavily on the indentured labour of disabled people. Today this is continued through labour programs that create a second class of workers. This poses the most significant threat to workers. Yet, MGEU has repeatedly supported the MDC transitioning into an Employment Centre for adults labelled with I/DD. Employment centres such as the ones they are calling for, typically use and proliferate sheltered workshops. Sheltered workshops rely on sub-minimum wage labour and continue to be used in Manitoba. Sheltered workshops are segregated workplaces or “training programs'' for people labelled with intellectual disabilities. CORCAN, the federal prison labour program, uses the same language of “employment and employability skills training," to justify coerced, underpaid labour. These programs promise training, but for many incarcerated and disabled people it is a lifetime of training. These “employment programs” typically find workarounds to the minimum wage provisions in the Employment Standards Code by offering people labelled with intellectual disabilities a per diem or honorarium, and thus can pay workers pennies. Sheltered workshops are exploitative programs that put workers at significant risk. As a labour union, MGEU should be fundamentally opposed to these dangerous and coercive workplaces. Instead of supporting these forms of coercive labour, MGEU should be working to unionize disabled workers to instill workplace protections. Is this deinstitutionalization? While the MDC will be closing, we are far from close to deinstitutionalization in Manitoba. Disabled people continue to be confined in long-term care homes, group homes, and prisons. Only once every form of institutionalization, confinement and control is abolished can disabled people be free. Despite the impending closure of MDC, the ongoing institutionalization and segregation of disabled people continues. But one example of this can be seen in the 2018 construction of two segregated homes for “adults with challenging intellectual disabilities." These segregated homes were specially built with “reinforced walls, doors and windows, as well as strengthened plumbing systems." These types of homes have access to “behavioural planning mechanisms," which can include chemical and physical restraints and confinement. These new forms of institutionalization demonstrate the need for ongoing movements against institutionalization. Liat Ben-Moshe argues that deinstitutionalization is only realized with the abolition of carceral ableist logic. Abolitionists and disability organizers should work together to demand justice and freedom for all for institutionalized people. For instance, current plans to transform the MDC into a personal care home, a treatment facility, or an employment centre will simply maintain it’s institutional history. Moreover, this erases the violence perpetuated at this site of confinement. Just as in Huronia and Kingston, demands must be made to create a memorial at the site of MDC. This is necessary in order to make “sure that people, locally and nationally, remember the brutal and recent history of eugenics and abuse that took place on the site." The fight for justice must include accountability. Currently, none of the records from the MDC are publicly available. These records must be made public in order for there to be accountability for the institutionalization of disabled people. Academics and survivors have raised concerns about unmarked graves in the cemetery; this must be investigated. The violence within these institutions must be reckoned with. This injustice cannot be forgotten. _____ By Megan Linton, Ottawa. @PinkCaneRedLip

In July 2021, survivors of the Child and Parent Resource Institute (CPRI) – once known as the Child Psychiatric Research Institute – settled a $12 million class-action lawsuit out of court. It was the seventh and – according to Koskie Minsky, the class-action law firm representing survivors – “likely last” class action between survivors of provincially operated residential institutions for people with disabilities and the Ontario government. Each of these seven lawsuits has unveiled horrific accounts of violence, neglect, and abuse of disabled people incarcerated in these institutions. In Ontario’s institutions, survivors recount being locked in metal cages, forced to haul gravel without pay, and beaten by staff. They wanted justice – which, for many, included financial reparations, government apologies, and for the government to never again run institutions for disabled people. Class-action lawsuits are one way for groups of people to pursue justice after shared experiences of harm – and on the surface, they seem like a good way for survivors of institutional abuse to get the restitution they deserve. But in looking closely at class-action lawsuits for survivors of institutions in Canada, justice remains elusive. Hearing their stories The CPRI settlement in July 2021 would be different from earlier settlements for survivors of provincial disability institutions. This time, there would be no apology from the government. The institution would remain in operation. Survivors who were “class members” in the class action would be put under a stringent communication ban, which barred them from sharing or archiving their experiences at CPRI. That meant there would be just one chance to listen to their stories. Alone in my apartment, I log in to the CPRI settlement agreement hearing. This glitchy Zoom call is the only opportunity for survivors to publicly share what they endured while incarcerated in an institution that promised to care for them. For a few short minutes, the chat function was a place of community and solidarity. It served as a memorial. “good morning to all who are here finally getting restitution. 8 months of torture for me. Much love to alll that were there” “I was never the same after that fucking place” “Me either. Fucking monsters” The reasons disabled people – and those labelled as such – are forced to live in institutions differ. Some begin living in institutions because of a lack of available resources to support them surviving in their community. For others, the label of “intellectual or developmental disability” is used as justification to expand the incarceration of people whom the Canadian government deems “degenerate”: largely Indigenous, poor, and racialized people. “The psychiatrists tried to put me down by labelling me ‘schizophrenic’, ‘psychopathic’, and ‘violent,’” recalls Mohawk psychiatric survivor Lionel Vermette in the 1988 collection Shrink Resistant: The Struggle Against Psychiatry in Canada. “The guards attacked my Native identity. They all failed. I’m not a bad person. I’m not violent. I’m an Indian, a good Indian, and I am very proud.” Institutional scholars Kate Rossiter and Jen Rinaldi use the term institutional violence to describe the widespread abuse, sexual sterilization, corporal punishment, public humiliation, medical experimentation, solitary confinement, and torture that happens inside places like the CPRI. It means that the violence is not an accident, but a deliberate and inherent feature of government-run institutions. “I was locked in padded rooms till i peed myself starved and more needles of ‘calm me down’ fluid i can remember and many beatings” “I can’t possibly imagine the number of ppl who have committed suicide because of what happened” The clerk closes the chat function. I light a cigarette from the solitary pack I keep at the back of my closet, reserved for the news of another Mad suicide. How many cigarettes does one smoke for the uncountable? Over the last decade, I have organized and researched alongside survivors of institutions for disabled people, and written about their legacies in policy, media, and social movements. It’s gut-wrenching work that involves paying close attention to disabled death: the 20,000 people killed in institutions like long-term care homes during COVID-19, the endless inquiries into deaths in group homes, the bodies in institutional cemeteries. Much of the information about institutions – like the number of people who died there, number of COVID-19 outbreaks, use of restraints, and even the number of people incarcerated inside them – is not publicly available and is often shielded from even the most savvy Freedom of Information requests by thick walls of medico-legal bureaucracy. In other words, out-of-court settlements obscure the harms of these institutions, and they often run counter to the demands of survivors for accountability, transparency, and closure. So, class-action lawsuits are pointed to as one of few windows into the institutions that confine disabled people. In the U.S., class actions against large-scale institutions have exposed the systemic violence of institutions, and in some cases have led to their closure. Abolitionist disability scholar Liat Ben-Moshe refers to these cases as “abolition litigation.” Rather than trying to reform institutions, Ben-Moshe writes, “lawyers did not just seek reparation for or change in the conditions of institutions but sought to prove that these carceral locales are inherently unnecessary and unconstitutional, and therefore need to be closed altogether.” In Canada, class-action lawsuits against institutions for disabled people have produced different results. Here, 100 per cent of these class actions have been settled out of court. This means the lawsuit never goes to trial – and it’s largely through trials that institutional documents are released and survivors’ testimonies are entered into the public record. In other words, out-of-court settlements obscure the harms of these institutions, and they often run counter to the demands of survivors for accountability, transparency, and closure. Bound to an agreement Class actions are used to remedy a wide variety of harms. Two of the largest class actions in Canadian history show the range of injustices they address: the ongoing lawsuit against Loblaws and other bread sellers for their role in price fixing bread for Canadian bread purchasers between 2001 and 2021, and the $1.9 billion settlement for survivors of abuse at Indian residential schools. Class actions work pretty well in getting consumers financial reparations for corporate schemes like price fixing, especially when it would be too difficult and expensive for every individual consumer who was affected to launch their own lawsuit against the company. But they do not guarantee the systemic changes that would put an end to the practices that caused plaintiffs to sue in the first place. This was abundantly clear in the class action of survivors of residential schools against the Government of Canada. Fifteen years after the settlement, survivors and their descendants continue to face relentless roadblocks in accessing records about residential schools from the federal government and the Catholic Church. As class members, survivors of abuse are often bound by non-communication rules that prohibit them from speaking out about their negative experiences. Lawyers from the Class Action Clinic at the University of Windsor point to another barrier to accessing justice. In, Canada class members are automatically included in a class action unless they opt out. Class members are the people belonging to the group affected by the allegations against the defendant – for example, anyone who bought price-fixed bread from the eight big Canadian bread sellers in the last 20 years. Frequently, the window to opt out of being a class member expires before the settlement agreement hearing even begins. This means that many people don’t even realize they are class members, but after the class action, they can no longer individually sue for damages. As class members, survivors of abuse are often bound by non-communication rules that prohibit them from speaking out about their negative experiences. There’s also a window of opportunity for class members to claim money. In the instance of CPRI, class members had nine months after the court approved date to file a claim. Many survivors of abusive institutions are unhoused or precariously housed; others have been moved into new institutions like prisons, long-term care facilities, and group homes. When class members are hard to contact, they may find themselves bound to an agreement – or owed money – they don’t even know about. Once class members have been notified of a settlement, they can make a claim and potentially access settlement money. In the CPRI settlement, the amount of money a class member would receive was determined by a complex point system that set out to determine the severity of the abuses they experienced. To prove that they were abused, survivors had to provide medical records and a sworn affidavit. But for disabled people who do not use verbal communication, they were often not given the necessary tools – like letter boards or tablets – to articulate their experiences. At the CPRI settlement agreement hearing, survivors spoke to the absence of records in these cases. “Reason i disagree with the settlement is that there were a lot of kids there who can’t speak for themselves, they can’t tell you what happened to them. But i saw it firsthand.” “This settlement means you have to have been hospitalized – but there were doctors on staff, so a lot of it was taken care of there.” “For all the people who can’t speak, it is hard. I have found it hard not to cry for others, for myself.” The Huronia settlement Over a decade before the CPRI settlement, a lawsuit against the Huronia Regional Centre was filed by survivors Patricia Seth and Marie Slark after reuniting at Marilyn Dolmage’s kitchen table. Seth and Slark were dropped off at Huronia when they were six and seven years old, respectively, and they remained there for almost 15 years. During that time, Dolmage had worked as a social worker at Huronia and had stayed in touch with the two women. Huronia was opened in 1876 in Orillia, Ontario – first as the Orillia Asylum for Idiots, later renamed the Ontario Hospital School, then the Huronia Regional Centre. It was the first institution for people labelled with intellectual or developmental disabilities built in Canada. Within its first 100 years, 4,000 children and adults died there. While institutionalized, Seth and Slark endured horrific abuse: they were locked in metal cages, sexually and physically abused by staff, and watched while in the washroom. Together, they decided to launch a class-action lawsuit in 2007, with Dolmage and her husband Jim acting as litigation guardians. Under law, disabled people who are labelled “incapable” are not permitted to launch a legal action or direct their lawyers, so litigation guardians can help give instructions to lawyers and support disabled claimants. “When you have an intellectual disability it feels like most people don’t care about [your] opinion, especially if you are poor,” Seth tells me. “And most of us live in poverty.” This idea of “capacity” is foundational to the legal system and it forms the basis for what researcher Sylvia McKelvie dubs legal ableism. Legal ableism encompasses the ways in which the legal system discriminates against and removes agency from people with disabilities. Seth and Slark’s experience of the class action was marred by systemic and legal ableism – even with their own lawyers. “When you have an intellectual disability it feels like most people don’t care about [your] opinion, especially if you are poor,” Seth tells me. “And most of us live in poverty.” “We know what it’s like to be intimidated,” Slark adds. “To have authority figures over us.” Class actions begin with a certification hearing, where the court approves the case as a class action and approves the lawyers as the representatives of the plaintiffs and defendants. After the certification hearing in 2010, Seth, Slark, and the Dolmages’ relationship with their lawyers at Koskie Minsky – the same class-action law firm that would go on to represent survivors of CPRI – quickly deteriorated. When I speak to the Dolmages, they say that once the certification hearing was over, they were aggressively “bullied back and forth” by the lawyers. They explain that their lawyers applied intense pressure to Seth and Slark to prepare for trial, then switched tracks, pressuring the two plaintiffs to settle. During that time, Koskie Minsky lawyers met with government lawyers without the plaintiffs present, and they agreed to terms for a proposed settlement – terms that Seth and Slark opposed, and the lawyers refused to change. The lawyers signed the final settlement agreement without telling Seth, Slark, or the Dolmages, or even showing them a copy. And while Seth, Slark, and the Dolmages were frustrated by the process, they did win some important things: easier access to settlement funds, the right to not return unclaimed funds to the government, and a memorial for survivors. Though Seth and Slark were seeking $1 billion in damages, in 2013 the lawsuit settled out of court for just $35 million. As is common in class-action lawsuits, about half of that – $18.8 million – was claimed by survivors; $8.5 million of the settlement went to Koskie Minsky’s legal fees, $3 million went to the Law Society’s class proceedings fund, and $4.7 million went to projects that benefit survivors. And while Seth, Slark, and the Dolmages were frustrated by the process, they did win some important things: easier access to settlement funds, the right to not return unclaimed funds to the government, and a memorial for survivors. Huronia survivors could access settlement funds through one of two streams. The first was a points system, where those who experienced the most severe physical or sexual abuse could claim up to $35,000 – but in order to do so, they were required to submit a sworn affidavit and medical records. The second stream was more accessible: a lump sum payment of $2,000, which survivors could receive by simply checking a box to confirm they attended the institution. In class actions, when class members don’t fill out forms or cash cheques to claim their settlement money, the unclaimed funds are typically returned to the defendant. In the case of the Huronia settlement, $23.4 million was allocated for survivors, but only $18.8 million of that was claimed, leaving $4.6 million that would have been returned to the Government of Ontario. But Seth and Slark won the right to not return leftover funds in their agreement. Instead, they negotiated for what’s called a cy-près, where they were able to put the unclaimed settlement funds toward research and memorials for survivors of Huronia. Despite the settlement’s shortcomings, the process sparked news coverage and brought to light the horrific treatment of disabled people confined within institutions. “The settlement has been incredibly productive in terms of relationships, projects, and the opening of public discourse that has allowed a discussion of institutionalization to flourish,” says Dr. Kate Rossiter, a scholar studying institutions who has worked alongside survivors to ensure their stories are remembered. These victories set Seth and Slark’s case apart from other institutional class actions that followed. The remaining institutions Shortly after the Huronia agreement in 2013, two more class actions were filed by survivors of the Rideau Regional Centre in Smiths Falls and the Southwest Regional Centre in Chatham-Kent. Both were settled out of court, each for millions less than the Huronia settlement. But these agreements had many of the same stipulations: an option for a smaller, easier-to-access lump sum payment, an apology from the premier, and a redirection of unclaimed funds to developmental disabilities projects. In 2015, the next settlement agreement was reached on behalf of survivors of 12 additional institutions across Ontario. Settled at $36 million collectively, or $3 million per institution, this was the lowest settlement and would not come with an apology or project fund. Outside of Ontario, similar class-action lawsuits have been filed by survivors of institutions in B.C., Saskatchewan, Manitoba, New Brunswick, Nova Scotia, Newfoundland, and P.E.I. The Dolmages have followed these subsequent class-action settlements closely, feeling increasingly frustrated with the outcomes. “Our hopes were that the Huronia settlement would set a strong foundation for future cases,” Marilyn says. “Instead, every case has been more and more watered down.” The institution that remains In the 2021 CPRI settlement approval, the judge highlighted the similarities with the Huronia agreement multiple times – but the outcomes were very different. In the $12 million CPRI settlement, there was no option for survivors to disclose less information to receive a smaller lump sum. The CPRI settlement’s point system only included four “levels” of violence: physical assault and three levels of sexual assault. Every survivor who wanted to receive settlement funds for physical assault, or levels 2 or 3 sexual assault had to submit affidavits and medical or administrative files proving their abuse. Unlike in the Huronia settlement, the levels did not include various forms of physical or emotional abuse – corporal punishment, humiliation, and “non-severe” physical abuse. This points to the larger issue: that class-action lawsuits cannot put a stop to the harms of government-run institutions. In the end, there was no apology, no money for further research, and no opportunity for archival projects. The institution remains in operation. In 2012, only a year after CPRI was de-listed as a residential mental health institution, an autistic child was beaten nearly to death by a staff member there. He was excluded from the class action. This points to the larger issue: that class-action lawsuits cannot put a stop to the harms of government-run institutions. “We’re not done fighting yet” Most class-action lawsuits settle out of court. Research by Jasminka Kalajdzic, author of Class Actions in Canada: The Promise and Reality of Access to Justice, reveals that in Ontario, where there have been over 500 class-action lawsuits, only 18 have gone to trial. Kalajdzic argues that out-of-court settlements obscure the harms of institutionalization experienced by both survivors and those who died while incarcerated. There are no public hearings, and the records of the harms tend to remain inaccessible. Cindy Scott is one of the many Huronia survivors fighting back against the insufficient class-action settlement agreement and the government that failed to keep the promises it laid out in its 2013 apology to survivors. “The government got away with it. They killed people,” Scott says. “The government should be ashamed of themselves.” Scott is a member of Remember Every Name, a Huronia survivors’ organization working to fill in the gaps in knowledge about those who died at Huronia. Before 1958, most of the grave markers in Huronia’s cemetery bear only a number – the order in which people died – and no name. Some grave markers from before 1930 have been removed entirely. Today, no one knows for sure how many people are buried at Huronia – certainly at least 1,379, but likely more than 2,000. A photo of a large black stone monument, with words engraved on the front. It's standing on a green lawn and surrounded by a dozen people, including a person in a wheelchair, a number of children, and one person who is reading from a paper. In 2015, Remember Every Name found out that a sewage line had been built through the cemetery of the Huronia Regional Centre decades ago, which may have disturbed graves. Survivors have also protested the government’s memorial, which was built as a condition of the settlement. Survivors have noted inaccuracies in the plaques designed to memorialize people buried in the cemetery. So, Remember Every Name used the unclaimed funds from the settlement to create their own memorial – to this day the only institutional memorial approved by survivors in Ontario. Sarah Jama, co-founder of the Disability Justice Network of Ontario, says the way class-action settlements have played out is part of a bigger culture of secrecy around government-run institutions. “Governments of all jurisdictions in so-called Canada continue to try to bury the deep harms and the violence perpetuated by the state through these publicly funded institutions,” she remarks. Today, institutions remain an ongoing reality in the lives of disabled people, particularly those labelled with intellectual or developmental disabilities. Scott points to long-term care institutions as one place where disabled Canadians are still confined – and where at least 20,000 people died during the pandemic. The underlying goal of institutions remains constant: isolate and segregate disabled people at the lowest cost possible. In the words of late disability radical Marta Russell, “Though transfer to nursing homes and similar institutions is almost always involuntary, and though abuse and violation within such facilities is a national scandal, it is a blunt economic fact that, from the point of view of the capitalist ‘care’ industry, disabled people are worth more to the Gross Domestic Product when occupying institutional ‘beds’ than they are in their own homes.” Talking with Marilyn Dolmage, Cindy Scott, and Sarah Jama, the path forward seems clear. We need a future free of institutions, with supportive and well-resourced communities in which disabled people can thrive. Though class actions can win some restitution for survivors – money, apologies, and media coverage – they haven’t brought us much closer to this just future. ______ Article written by Megan Linton Megan Linton is a disabled writer, researcher, PhD student and creator of Invisible Institutions , a documentary podcast and research project exploring the past and present of institutions for people labelled with intellectual and developmental disabilities in Canada. Find her on Twitter at @PinkCaneRedLip . Source: https://briarpatchmagazine.com/articles/view/class-inaction

September 2, 2022 Debbie Vernon Remember Every Name Group vernon@muskoka.com Dear Ms. Vernon  Thank you for your kind and informative e-mails in assisting me on my journey of discovery since early June. Your engaging missives warmed my heart. I am writing to you again to share more information on the tragic, unexpected death of my brother while he was a resident at the Orillia Asylum for Idiots (Huronia Regional Center). The anguish I felt after recently reading his hospital file, can be comparable only to what our parents must have felt the morning they received the 6:30 a.m. call that their baby boy was dying. Although it has been almost sixty-five years since his passing, the knowledge of the way he died remains painful. I recently became acquainted with Remember Every Name and wrote on the site about my brother’s death in 1957. Debbie immediately responded and gave me the address to request a copy of his file. Jessica, a Policy Analyst at the Ministry of Children, Community and Social Services forwarded a copy of the file on July 15th of this year. After sharing the Autopsy results in the file, Debbie passed on the information to contact Marilyn, the Litigation Guardian for the Class Action against the Ontario government. Marilyn stated that he was the youngest admitted and that my brother died sooner after admission than anyone she’s heard of. Ronald Allan was born July 24, 1956 and died December 12, 1957 at twenty-four pounds and thirty inches tall. He was admitted to the institution November 14th, 1957 at 506 days old and was pronounced dead twenty-eight days later. His short life has been masked with mystery until July 15th 2022. I am thankful that this last picture taken of him at the institution was included in his file.

MEDIA Bracebridge Examiner Article by Mary Beth Hartill - April 12, 2022 Muskoka 411 Article by Maddie Binning - April 28, 2022 Point of View Magazine Interview by Marc Glassman - May 2, 2022 Canadian Journal of Disability Studies Film Review - April 2023

Without proper support to live at home, they have no choice but to stay in "medical prison cells".

Developmentally disabled adults, some as young as 21, are quietly being moved into nursing homes because the Ontario government has nowhere else for them to live. While the province is closing down one set of institutions for those with developmental disabilities – the regional centres – it is using long-term care facilities to house more than 1,600 other people with developmental disabilities. The developmentally disabled languish there – surrounded by the frail elderly receiving end-of-life care – while waiting for scarce residential placements in the community. Todd Matthews, 44, who has Down syndrome, lived with his mom in Newfoundland until she died three years ago. Today, Todd lives at the Avalon Retirement Centre in Orangeville with people twice his age while he waits for a placement in a group home. He will probably have to wait at least five years. Cindy Matthews, his sister-in-law, brought him to Ontario and sought the assistance of Community Living Dufferin County to have him in her home. She received $2,500 a year to pay for support workers and Todd was placed in a day work program. But it wasn’t enough to give him the 24-hour supervision he needs and Cindy burned out. Although gentle and well-behaved, he might walk outside without a coat, burn himself on the stove or be frightened by an emergency. “I would like him to be with his peers in a group home,” laments Cindy, 50, who works in the same nursing home and sees Todd every day. Todd’s home now is a four-bed ward. “I think he deserves better,” says Cindy. Karen Jobbins, 52, successfully lived in the Bracebridge community for 49 years, but her world fell apart when her elderly mother’s health failed three years ago. When her mother became ill, sister Debbie Vernon moved Jobbins into her home and tried to care for her while requesting around $40,000 a year to support the disabled woman full-time in her own rented accommodation. Part of that plan allowed for a roommate to live rent-free in return for providing overnight care. This may seem like a lot of money, but Vernon points out the government is spending more than that – roughly $46,000 a year – to put her sister in the nursing home. When Vernon was turned down for funding and no appropriate group home could be found, Jobbins had to move into the Pines Long Term Care Facility. Vernon is heart-broken that her sister has lost contact with all the people she used to see in the community as she went about her activities, and that she no longer gets to go swimming regularly. She is also sad she had to break a promise to her now-deceased father that Jobbins would never be institutionalized. In an email she writes, “Unlike the very elderly people she lives among, Karen is waiting to live.” Professor Patricia Spindel, a senior advisor for Community Living Ontario for almost a decade,has been studying the movement of the developmentally disabled into nursing homes for more than a decade. A professor of family and community social services at the University of Guelph-Humber College, she wrote her PhD thesis on the long-term care sector. After Ontario stopped placing children with developmental disabilities in nursing homes in the 1980s, Spindel says she thought that issue had been put to rest. However, after a brief lull, a new trend involving adults began and Spindel started tracking the new “institutionalization” of the developmentally disabled into nursing homes. The huge increase of nursing home beds in recent years produced, in some jurisdictions, an over-supply of beds, she says, so that funnelling the developmentally disabled there has helped keep the nursing homes lucrative and filled. She points out that nursing home beds are relatively cheap – cheaper than spaces in either group homes or regional centres – and many of the homes are for-profit enterprises. Spindel discovered that people with developmental disabilities are, on average, 31 years younger than the general nursing home average age of 83. Some are as young as 18. A Ministry of Health and Long-Term Care report in October states that the 1,691 developmentally disabled residents in nursing homes are physically healthier, more independent and use less medication than the elderly residents. As well, they have one-fifth the physical care needs of the elderly residents. On the other hand, they are two to three times more likely to have behaviours such as agitation, anxiety, demands for attention, hoarding and aggression. Barb Gauntlett, of London, Ont., a developmental support worker for the Alice Saddy Association, has more than 40 developmentally disabled clients living in nursing homes and says “20 don’t belong there.” One client, whom she succeeded in getting moved out into a home, was only 21 years old. One of the causes of the movement into nursing homes was the closing of area regional centres for the developmentally disabled, she says. With insufficient resources in the community, people “are not given choices” and end up in nursing homes by default, Gauntlett notes. The death of a care-giving parent often sets the stage for a move to a nursing home, she says, as waiting lists for residential placements in the community are lengthy. London has a waiting list of 250 (Toronto’s list has more than 2,000 people). One of her clients, who is 60 years old, has told her, “I would rather live in a house,” and Gauntlett says that shouldn’t be an unreasonable goal. “Who wants to be in a nursing home? It’s the new institution, the new dumping ground.” As Janis Jaffe-White, volunteer co-ordinator with the Toronto Family Network, a parent support group for families coping with developmental disabilities, puts it: “People are just being moved from one institution to another.” She adds, “If the Ministry of Community and Social Services provided adequate community support, then families would not have to resort to nursing homes. I have lots of families at risk and this is not an appropriate action.” People interviewed for this story wanted to be clear that they were not criticizing nursing home staff for their care nor questioning the need for such places for the frail elderly. But they have serious questions about the appropriateness of putting younger people with developmental disabilities into these homes. An inappropriate placement may be responsible for the death of 59-year-old Keith Croteau on Jan. 25 following an alleged beating by another developmentally disabled resident of a Sudbury nursing home. His sister Sandra says Keith lived successfully in the community with supports until his mother’s death in 2001. He suffered a major depression and wouldn’t eat or take care of himself and ended up needing round-the-clock care. Upon the advice of Keith’s community worker, the family decided to place Keith in the Extendicare York nursing home, she says. When a roommate – a much older man – died, Keith was upset, Sandra remembers. “He said, `I’m going to die in here.'” However, he adjusted over time and Sandra felt “he was being taken care of and he was doing good.” Fellow Extendicare resident, Bryan Belliveau, 55, who also has a developmental disability, has been charged with second-degree murder in Keith’s death. Sandra has asked for an inquest and questions how Belliveau was selected as her brother’s roommate. The developmentally disabled who need extra care shouldn’t be lumped into nursing homes with the elderly, Sandra says. “There’s no place for them to go. There are only three institutions left and they are closing them. A 59-year-old wants to be out, doing stuff.” Sudbury-area MPP Shelley Martel agrees that younger people with developmental disabilities aren’t a good fit in long-term care facilities. “My concern is that long-term care is inappropriate for them by age and inappropriate to have their needs met.” Last July, the social services ministry signed a protocol with the health ministry spelling out the procedure for moving the developmentally disabled into nursing homes if there are insufficient community-based resources. “It’s sick. It’s perverted, ” says Linda Till, 52, who rescued her adopted daughter Becky, now 34, from a nursing home when she was 11 years old. The uproar over the plight of children in nursing homes resulted in a ministerial decision in the mid-1980s to stop sending children to them. Now, Till foresees a similar battle to keep the older developmentally disabled out of nursing homes. “It’s regressive in the extreme,” says Till. “But it is consistent with the response to the developmentally disabled by government and the general public. It permeates every element of society. We have an aversion that is unexplained. We shuttle them off to be hidden.” Till lives in Sharon, north of Newmarket, and fears that when she dies, Becky may be forced back into the kind of nursing home she was freed from as a child. Keith Powell, executive director of Community Living Ontario, wants Social Services Minister Madeleine Meilleur to invest in more community placements so young people with disabilities don’t have to go into nursing homes. “What alarmed us (about the protocol) was the clear direction to think about moving people out of community and into long-term care,” says Powell. “This is entirely inconsistent with what we were being told (by government).” After more than 50 years of working with the developmentally disabled, Powell says his agency “knows that in an institution there is a huge risk and a huge price to pay.” Meanwhile, Cindy Matthews does her best to make sure Todd has as normal a life as possible. Todd has been allowed to continue in his day program out in the community where he earns spending money by doing piece work. It helps to pay for his cable and telephone in the nursing home. There have been glitches, such as when a bout of flu closed the nursing home for six weeks and Todd wasn’t allowed to leave. But he is used to being around the elderly, having lived his whole life with his mother and grandmother. Todd is actually a good caregiver, says Cindy, adding he used to put his mother’s blankets in the dryer to warm them up when she was ill. He also helps set the dinner table and can do other useful tasks for the other residents. Cindy’s number is on Todd’s speed dial and she talks to him every evening as well as throughout the day while she is at work scheduling staff. Both she and her husband Harry, Todd’s brother, are 50 and working full-time. They want to do their best for Todd and are hoping that, one day, he will be able to live in a house with people his own age. At 44, Cindy says, “Todd deserves to live in the community and to have his own room.” Source: Toronto Star, Trish Crawford - Feb 16 2007

Simon Snyder from Enfield, N.S., spent seven years at an institution for Nova Scotians with intellectual disabilities. He's opening up about his painful past to educate the next generation about the truths of institutionalization. Host Jeff Douglas spoke with Simon, as well as writer and autism advocate Jake Lewis, one of the youth taking part in a nation-wide project called The Truths of Institutionalization: Past and Present. Aired: Aug. 24, 2021 from Mainstreet NS with Jeff Douglas